LesHasCancer

Friday, April 5, 2019

I left you in October of last year.Much has happened since.First, Kathe and I moved from the San Diego
area to the Hilton Head, South Carolina area.The move was extremely stressful as we (1) got rid of lots of stuff, (2)
packed 400 boxes, (3) finally sold our house in San Diego, (4) sold one of our
cars, (5) had Mayflower truck our stuff to South Carolina, (6) carried the dogs
on the plane, and (7) unpacked, trying to get rid of stuff in the process.In the meantime I am still off of Lupron and
continuing my diet and supplement regimen.

It has been somewhat difficult to get an oncologist here since
they are in short supply in this part of South Carolina.Several new friends have said that the locals
call this the “Low Country” which is a geographic term, but a better description
would be to call it the “Slow Country” because things don’t move at the
expected pace.Such is the case for the
staff for one oncologist I tried to connect with.Out of frustration and also because of good reputation,
I finally contacted the Oncology Department of the Medical University of South
Carolina in Charleston, a 2-hour drive away.The staff there acted much like Scripps in California—professional and
to the point.I was assigned to Dr.
Michael Lilly who heads the Prostate Cancer Oncology group.Dr. Lilly was educated in San Diego and worked
at UC Irvine for many years so he understands my accent (kidding).

First South
Carolina examination – I went through the usual blood tests and received
some not-so-happy results.My PSA has
risen from .08 in December to 0.70 in the last 3 months.This translates to a doubling time of about 4
months, predicting that 0.70 would go to 1.40 in that time.My Testosterone level went from 42 ng/dl to
345 ng/dl.The rest of my tests were
pretty much normal.So much for going
without Lupron.Of course Dr. Lilly
would prefer to have more readings (wait for 4 months), but since the cancer
was invading my whole body with a PSA of 1.6 in the past, I don’t like to mess
around and give it a chance to grow.Going from 0.08 to 0.70 is an 8.75 times increase and the same with
testosterone.I had hoped that things
would move much more slowly with my diet and supplements, but now I will be
back on Lupron next week.

Metformin – So
I have been taking 500 mg Metformin for the past several months.I am doing this because I am pre-diabetic in
spite of my low sugar diet.There is
something about the diet that impacts my glucose levels.I am taking it also because of an off-label
use to slow cancer growth.So what has
it done?I don’t know--other than make
me lose weight.I don’t want to lose weight
so I eat more.My glucose levels are
lower, but I don’t know if it is having any impact on the cancer.

Otherwise I am not feeling any side effects I would
consider to be from the cancer itself.I
do have lots of somewhat normal aches and pains and some residual from the
chemo like nasty toenails.For that I
went to a podiatrist for the first time.My toes are looking much better now.

Tuesday, October 23, 2018

October 23, 2018 – Follow-up, no Lupron

“Remission Man Gets Checked” was the headline in the
local paper.Okay, it didn’t make the
papers because it wasn’t that exciting.In
my September 7th checkup I had asked to stop the Lupron injections
to see what might happen.My oncologist agreed,
as long as we watch my PSA and testosterone levels in 6 weeks.Today was my 6-week appointment.

I had the labs the day before and unfortunately the
ultra-sensitive PSA results take several days because they send the sample out.In the meantime all of my other results were
extremely normal.My testosterone level
is 17, which says the Lupron is still affecting me.I am now chaffing at the bit to know what my
PSA is.

During this period I have been taking my supplements, watching
my diet to cut down on sugar, and doing some exercising.I need to exercise more!I feel I am wasting away, although I have
only lost three or so pounds.I just
feel skinny, seeming that my muscles are smaller and I am not as strong.

During this period I also considered the Care Oncology
Centers protocol, mainly because of a post in UsToo! from a guy with the same
Stage IV cancer who went on the COC protocol and, without Lupron, experienced
tumor shrinkage. The Care Oncology protocol is:Oral atorvastatin up to 80mg once per day, oral metformin up to 1000mg
onceper day, increased to bid, oral
doxycycline 100mg once per day, oral Mebendazole 100mg once per day.It is managed by a tele-doctor and my labs on
a quarterly basis.The initial tele
consult costs $800, the meds cost $60/month, and quarterly consults cost
$295.Of course none is covered by
insurance.

I talked to a COC specialist and he recognized that some
of what I have been doing with my supplements constitutes a metabolic treatment
(affecting cell growth).The COC
protocol is essentially metabolic treatment.He talked about the advantages of metabolic treatment and how safe their
particular treatment is.He added that
he thought in my case the treatment would stave off the cancer growth and,
using doxycycline in particular will help stop calcium from leaching into the
bloodstream.

I discussed this with my oncologist, Dr. Bhangoo.He said the protocol could possibly help, but
that there was so little evidence that it would help in the case of prostate
cancer.I thought a lot about what he
said, what the COC doctor said, and read as much as I could find on COC.I came to the conclusion that I would just
continue my “metabolic” treatment with the supplements that some evidence has
shown have reduced cancer cell production and see what happens without the
Lupron.I’ll reserve COC for later.

That said, I had read that metformin, which is used to
treat diabetic conditions, may be a true anti-cancer drug.This was first based on anecdotal evidence
that diabetics being treated with metformin had a reduced risk of cancer and
improved cancer outcomes.Since this
discovery, preclinical studies have shown that metformin impairs cellular
metabolism and suppresses oncogenic signaling pathways.In other words it could slow cancer cell
division.Metformin also has few side
effects, the major one being diarrhea.

I talked with Dr. Bhangoo about my desire to try
metformin to go with my supplements that are also trying to also slow or stop
cancer cell division.He said he could
prescribe it for me and we could start with a low dosage.I am very much looking forward to getting my
prescription.I am less concerned about diarrhea
because I am having the opposite problem recently.I am blaming my problem on the Modified
Citrus Pectin or some other supplement I am taking.Being constipated is no fun!My oatmeal and veggie smoothies aren’t doing
the trick.

So, next we will (1) find out what my PSA reading is and
(2) see what happens when I take metformin.

Tuesday, August 14, 2018

So what should I call myself now? I was “No Active Disease (NAD) Man” in June. At about the time that I wrote my last post, I received “PSA undetectable and no radiographic disease so we can say cancer is in remission!” from my doctor. Am I “Remission Man”? Perhaps for the time-being I’ll take that name! It is certainly much better than “Chemo Man”, where I started.In my last post I said that I was going to have a DEXA bone scan for osteoporosis, thanks to the possible side effect of taking Lupron, the hormone-blocker. It took my persistent doctor at least twice to figure out how to code the DEXA scan so my insurance would cover it. Apparently prostate cancer is not enough—the code must have had to point to signs of it or a strong propensity for those without testosterone to get osteoporosis. The latter doesn’t seem to be a secret, as demonstrated by the technician who performed the scan. As I went through the waiting room full of women (not one man) the tech asked me what brought me there. I said the word “Lupron” and she said, “Ohhh, I heard about that…”.Anyway, I had the scan on July 16th. I haven’t received the official results but my doctor wrote “The scan looks at the bone density of the lumbar spine and left/right femur and compares against age-expected bone density. While the lumbar spine shows mild bone thinning, the femurs do meet criteria for osteoporosis.” Great! The good news is the “mild bone thinning in the spine” which means I am still 6’1” tall. This also means slightly less risk of bone breakage since my femurs are generally strong. However, it also means I need to commence on a more active attack on the osteoporosis.The doctor went on to say, “It is good we are aware of this as there are several proactive things we can do to improve the bone density. Weight bearing exercise, calcium/vitamin D (I believe you are already doing this).”I am taking vitamin D3 at a rate of 5000 IU per day but I have not been taking Calcium, other than the small amount in a multivitamin. I recently learned that in order for the D to be absorbed, it is best that I also take vitamin K2. So, now I am taking D3, K2, and Calcium in addition to the other 20 or so supplement pills. I am taking between 5000 IU and 10,000 IU of D3, 90-180 mcg of K3, and 1800 mcg of Calcium. The reason for the range is that I am torn. The amount of D drives the other amounts. 5000 IU is recommended, but I have had friends that reversed their osteoporosis with higher doses of D3. I may take the higher dose for a month and get my D level tested. I also heard that oatmeal (my regular breakfast) negates the effect of vitamin D, so I have to take the D at night.I am also taking a dose of CBD oil at night. I am taking CBD because some people have experienced stronger bones after taking CBD. I figure I would try it and see. I am actually taking a 30:1 concentration of CBD to THC. THC is the stuff that can make you high, but at this concentration it doesn’t. I feel nothing when I take it. I was talked into the low level THC by the argument that the small amount of THC can help in the treatment. I do think there is suppression of good news about both CBD and THC, which is an added reason to take it. It was $90 for a 30-day supply. Subsequently I have found it for less.For the exercise, I am also doing between 30 and 60 squats plus other upper body weight-bearing exercises per day. I can and should do more, but I really dislike exercising.I also am having my DNA analyzed. I am eligible for insurance coverage because of my extensive family history of cancer (dad, mother, brother, sister, and cousins). At first I had thought that this would lead to true personalized medicine, but for that I would need the DNA of the cancer itself to be analyzed. Of course with my cancer “undetected” this is not possible. I am getting my DNA analyzed for three reasons:1.Do I have the proclivity toward any other cancers in addition to prostate cancer?2.Should other family members get their DNA analyzed because I have particular markers?3.Do I have particular markers that might make me more likely to respond to specialized future treatments?I gave the blood to Ambry Genetics and just today heard that all of the 32 markers they checked came out negative. I guess this is good. It means I don’t have a genetic proclivity toward any other cancer. It also decreases the odds that other family members could have other markers. In fact the geneticist said that I should talk my sister and niece on brother’s side into having their DNA analyzed. This is apparently because ovarian cancer in families is very rare. I don’t think I am going to talk either into this in any case.I see my oncologist in early September. That is when I am due for my next Lupron shot. I am going to talk to him about the possibility of skipping one dose. It may be risky but taking the Lupron is having these less-than-desirable side effects. We’ll see what he says, although I do see him as wanting to stick with the prescribed program, which says to take Lupron for the rest of my life. This is to prevent the possibility that any cancer I may have may mutate into the androgen deprivation resistant form (also with the cute name “Castrate Resistant Prostate Cancer”). We don’t want that because it is essentially untreatable in the long run. The strategy is to delay until they find something that stops “CRPCa”.Onward and upward to the next month!Remission Man

Tuesday, June 19, 2018

I was going to write that my last
PSA test showed a drop back to 0.03 after my March test was a 0.04.Of course this was very good news, even
though the difference may have only been an anomaly.I should explain that even getting a an 0.03 takes
a special ultra-sensitive PSA test.The
less sensitive test can only say that the patient has a PSA of less than 0.06.In any case 0.03 says that if there is any
prostate cancer activity, it is extremely small.

Then today I underwent an Axumin™
PET scan, a new (approved by FDA on May27th) type of scan that uses and amino
acid analog called fluciclovine F-18 with radioactive fluorine-18 attached.This stuff is injected into my blood vein and
the drug is taken up by the prostate cancer cells.The fluorine-18 emits radiation that is
picked up by the PET/CT scanner, which in turn uses a computer to produce a
detailed image. A few minutes ago I
received the preliminary results from my oncologist, Dr. Bhangoo.He said, “PET scan shows no evidence
of active disease. Great result.”Quite frankly I was expecting much worse since this is a more sensitive
test than anything I have had before.It
does, however, make me wonder if my doctors are disappointed to see nothing
while using their brand new toy.J

I have stuck to my regimen that I have talked about in
the past.I did introduce a turmeric/curcumin
pill in my daily pile of supplements, even though Kathe does add some turmeric to
our shakes.

Last month I had my yearly Medicare wellness exam.My blood work showed everything in the normal
range except for one thing.This was my Hemoglobin
A1C which was 5.9 % (normal is less than 5.7%).This is pre-diabetic!My primary
care doctor said I should cut back on my sugar intake.WTF?I
am on a very low carb, almost no sugar diet! It makes me wonder what I was when
I was gobbling all those cookies and sucking in that pure white sugar.No one told me I needed to do anything then!?

I talked to several doctors about this finding.One said it could be the Lupron.Others said it could just my getting
old.Just Great!

Now I have to work on this problem in addition to keeping
up with the cancer fight.I do know
exercise is one thing I can do and I know I don’t exercise enough.Walking the dogs several times a day is not
enough.

I am reading a good book on nutrition entitled “Beating
Cancer With Nutrition” by Patrick Quillin.I recommend it to anyone who is going through this fight.It isn’t teaching me a whole bunch of things
I didn’t know, but it is reaffirming much of what I have been doing.It talks about four main contributors to
successfully fighting cancer: (1) positive mental attitude, (2) good doctors,
(3) mindful nutrition and building the immune system, and (4) exercise.It talks a lot about mental attitude and the
contribution that friends and strong beliefs can make.This cannot be underestimated.I’m getting into nutrition details now, but I
can say that I agree 120% that the four contributors are why I am here today
calling myself “NAD Man”.

So what is next?

I am going to have a DEXA (bone density ) scan soon and
am also going to have genetics testing.Stay tuned…

Friday, March 9, 2018

I just had my quarterly Lupron shot after my labs showed
that my blood work is “totally normal” according to my oncologist.Apparently the doctors are concerned about
the liver numbers in particular.I also
finally had another ultrasensitive PSA test.Scripps now send these out, so I got the results today—0.04.This is one hundredth of a point higher than
it was on 8/29/2017.It is not something
to worry about at this point, but I want to keep monitoring using this test
instead of the less accurate test the lab used since 8/29.That test cannot detect anything below 0.06.

I am continuing on my diet and the supplements.I also continue to talk with my peers who
have more ideas than there are supplements in the world about what we all
should be taking.

My oncologist talked with my contact at CureMatch, the
company that performs a complete analysis of a patient’s biopsy and history of
prostate cancer and comes up with potentially preferred therapies, including clinical
trials.The problem is that I don’t have
a biopsy and my cancer is sleeping right now.Last year I had a test to see if there were cancer cells floating around
in my blood (‘liquid biopsy”), but none were found.All this says is that I have to see
progression of my cancer before we can take this step with CureMatch.I could go off of Lupron, but letting the cancer
grow this way is problematic at best.Some of my peers have chosen to do this, but I guess I am too
conservative for this.I’d love to get
off of Lupron and its side effects, but I don’t want to run the risk of moving up
my end date.What I have to do is
something else to deal with the lack of sex drive, the loss of muscle mass, and
the neuropathy.The obvious partial
answer is exercise (yuck).

I am interested in Immunotherapy, but in order to have
the doctors decide whether I may be a good candidate, they need to get the DNA
of some active tumors, which I apparently don’t have.Back to the Catch 22.Besides, Immunotherapy has not been that
successful due to the nature of prostate cancer in contrast to melanoma and
other fast replicating cancers that make use of a particular mechanism that the
body can be made to attack.

I don’t like being on hold, so-to-speak instead of truly
attacking the cancer to kill it once and for all.I’m trying (with some success) to starve it
by taking away testosterone with a combination of supplements with some history
of curtailing some cancers and hoping that cancer feeds on sugar—hence a low
sugar diet.It is just that statistics
show that this approach will likely go the way of most diets—only temporary
curtailing of the problem child.

In any case, I’m just reporting that all is good and I
still have no significant symptoms that can be pointed directly at the cancer.

Sunday, January 14, 2018

Since my last post much has happened, but not too much on
the health score. I had my next checkup
on December 6th which was accompanied by another Lupron shot. I actually had a scare with my PSA, which,
when I looked at the results I saw 0.06, which is double that of my previous
0.03. When my oncologist said that I was
doing very well with an “unmeasurable” PSA I asked how that was, since it was
0.06?? He said, “Didn’t you see the <
sign before the 0.06?” So the result was
<0.06 or less than 0.06, not 0.06.
Whew!

So why was this test termed unmeasurable at less than
0.06 when they were able to measure 0.03 before? The obvious explanation is that the lab used
a less sensitive assay. This is annoying
to an engineer. Don’t mess with the
tests! I would hope to have the same
test assay as I had before the next time so I have the best measure.

My testosterone was 58, which is higher than my
oncologist would like it to be. It may
be because I was two weeks overdue for the Lupron shot, but now the he wants to
see me in two weeks to check testosterone in the middle of the 3-month cycle. Lord knows I don’t want my testosterone to be
lower from a side effects standpoint, but I also want to starve the cancer!

My trip to Washington D.C. On December 14th I went to Reston,
VA to be on a panel for one of the Congressionally Directed Medical Research
Programs under the auspices of the Department of Defense. The program in which I was chosen to
contribute was the Prostate Cancer Research Program. Through a very rigorous two-tier
process, this program chooses which research facilities, from of a large number
of proposals, will get funding toward finding a cure for prostate cancer. My
panel was comprised of leading scientists, clinicians and fellow consumer
reviewers (prostate cancer survivors).
The consumer reviewers were asked to assess proposals in the light of
potential patient impact and also provide a sense of reality to the scientists,
many of whom had never met a real prostate cancer survivor. The experience was very tedious, with several
weeks of proposal reading and review preparation, but it was also
fascinating. It is incredible what we do
know about the stages of prostate cancer and equally incredible what we don’t
know.

I learned a few little tidbits that were eye-openers for
me. For example, I knew that prostate
cancer tends to be a slow-growing disease (with exceptions of course). Because of this, unlike other faster-growing
diseases, prostate cancer mouse studies are difficult because the life span of
lab mice is around 2 years and lab rats 3 or so years. In other words, unlike studies of
fast-growing viruses the “patients” most often die before advanced stages of
prostate cancer can develop naturally.
This means that scientists have to resort to all kinds of unnatural
methods to speed up or slow down processes.
This also means that with prostate cancer one of the last steps before
human trials can be problematic.

I also learned that in practice the typical PET scans are
less effective after androgen deprivation treatment (Lupron) because the uptake
of glucose is less and can lead to missed tumors.

Most important to me personally was that some patients
with certain genetic markers have responded well to specific genetic
therapies. Since I have a family history
of prostate cancer that goes back several generations, it is time for me to get
some genetic testing. The possibility
that I may have favorable genetic markers that could lead to successful
treatment alone makes my trip to D.C. worthwhile.

As for my contribution to the panel, I hope I did help to
ensure that our tax dollars go to very worthwhile research projects that will
ultimately lead to a cure for prostate cancer.

Next steps. I am hoping to get my genome sequenced to see
if there is any other treatment that might be better than the Lupron. The “problem” with this is that it does
appear that my cancer is responding to the Lupron, so the doctors may not want
to okay any other treatment. This brings
up the subject of Protocol. Apparently
every disease has a treatment protocol that doctors follow (often somewhat
blindly) and insurance companies expect to pay for. For prostate cancer at my stage the protocol
is to treat with Lupron or similar androgen deprivation drug and if that shows
a drop in the PSA, continue. If the PSA
drop is sluggish or there are painful side effects of the cancer in the bones,
chemo is called for. After chemo when
the cancer stops responding to the androgen deprivation therapy Lupron or
similar drug (Castrate Resistant Prostate Cancer), then there are some drugs
that are called for. These deal mainly with
the side effects since at this point there is no cure. Fortunately in my case I am not there
yet. I believe this is (1) because we
broke protocol and went with chemo and Lupron out of the gate, (2) my general
health was pretty good going into it, (3) I made dietary and supplement changes,
(3) I’ve maintained a positive attitude, thanks in large part to a wonderful
support network of family, friends, doctors, fellow church members, and God’s
help.

So, since I am doing well, there will be a desire on the part
of the doctors to stick to protocol and not try anything new. I don’t agree. I think at the least I have to prepare for
the next phase. Hence I will be pushing
to get my genome sequenced to see if I might be a candidate for other
treatment. That’s my next step.

Tuesday, October 24, 2017

I
did see my oncologist on 8/31 as promised. I also
had my Lupron (androgen deprivation or hormone blocker) shot right after the
appointment. My oncologist said I looked
good and my labs were also generally good.
My PSA is still at 0.03 but my testosterone was higher than he would
have liked. [That just shows that you
can’t keep the old boy down, even with hormone-blockers.]

My
oncologist is operating under the theory that testosterone feeds prostate
cancer. Hence he would like to see it
below 25. On 8/29 mine was 53. This could have been because I had chosen to
get the Lupron shot two weeks after the 90 day mark. It could also be that some of the supplements
have had the effect of raising my testosterone level. BTW 53 is pretty low, since men my age
usually have around 278 ng/dl. I used to
have 450+. Those were the good old days.

I
have gotten back into my exercise program, doing push-ups at night and going to
the gym to do strength exercises. I
think this is helping my stamina and posture.
I don’t go overboard because I am afraid to end up like Arnold
Schwarzenegger.

I
have become more active in UsToo, an online organization of men fighting
prostate cancer. I have learned quite a
bit just by hearing other stories. I
also learned about a doctor at the Mayo Clinic in Rochester who is going for
the cure in patients with Advanced Stage IV Metastatic Prostate Cancer like me. More on Dr. Kwon later.

Palliative vs. Curative. Let me explain that my treatment and the
treatment of practically all patients at my stage of the disease is palliative,
which means that the doctors try to keep it at bay with the expectation that it
can’t be beaten in the long run.
Curative is treatment designed to rid the body of the cancer once and
for all. The problem is that curative
treatment still has relatively low win odds and the patients often go through
more aggressive, invasive treatments while the doctors attempt to kill all of
the cancer.

Do metastases replicate the same cancer throughout the
body?In the past it was thought that this was the
case. If so, if one is able to kill one
cancer, it would be possible to kill them all.
Unfortunately perfect replication is not the case. As cancers spread, they tend to mutate into
different forms. As a result, either
draconian treatments have to be given to kill everything that grows (chemotherapy),
or multiple different treatments are called for to get rid of all of the now
different cancers.

Dr. Kwon. Going with a curative approach Dr. Eugene Kwon at Mayo uses a different type of PET scan to find
tumors. It is a C11 Choline Pet
scan. My hospital doesn’t do C11 PET scans. Dr. Kwon says C11 scans are more accurate in
finding small tumors. As I understand
his process, once he sees that there aren’t too many tumors, he then tries to
gather information about each tumor, either by biopsies or other means. He then develops treatment plans for every
tumor. The treatment may be radiation,
chemo, or anything else. He has had some
real successes with this multi-treatment approach, but he admits to having
failures as well.

The
question is whether I should subject myself to Mayo. At one point I was ready to jump on a plane,
but I’m a little reluctant now, in small part because of Kathe’s and our schedule
and in greater part because I am doing pretty well now. Of course catching this early as possible
would be best. At the same time I don’t
particularly want to find out that I am not a candidate. In any case I have ordered copies of my
reports and scans to be ready to go.

My schedule. I have been fortunate enough to have been
nominated and then chosen to be on a team that will be evaluating research
proposals applying for grants from the Department of Defense in the area of
prostate cancer. It is called the DoD Prostate
Cancer Research Panel - Cell Biology. I
am the lay consumer on the panel. I will
be going to Reston, VA in the end of December.
It will be interesting being a lay panel member surrounded by renowned
medical scientists. I have been included
because the DoD wants to make sure that the grant choices take into account the
patients who might be recipients of the research. I’ll have to write my critique of each of the
applications.

Sugar feed cancer?
While I was corresponding with several others with the same cancer as I
have, I mentioned my avoidance of sugar and carbs as part of my dealing with my
disease. I was pointed to an article on
the Memorial Sloan Kettering website that said that it is not true that sugar
feeds cancer. The article said that
people have falsely concluded that because cancer attracts the glucose in the
radioactive cocktail taken for PET scans, glucose must be what cancer thrives
on. Well, needless to say, I would like
to believe this and eat some cookies that I have craved for a solid year, but
based on all of my other reading I can’t accept this anywhere near 100%. What MSK does say is that sugar and carbs
lead to obesity and obesity in turn does seem to increase cancer growth. I’m not gaining weight but I do think a low
sugar, low carb diet is good for me, no matter what.

So, what is happening inside me? This I truly want to know. The doctors say that the only indicator of
growth is PSA. This makes me want to get
a PSA test every few weeks, but my doctor and my insurance provider have
something to say about this. The other
possible indicators are secondary effects of cancer in my bones. As a result I am concerned with every ache
and pain that it is the result of growing cancer. My aches and pains don’t seem to be getting
worse in general. I do feel dull pain in
my chest when I first lay down on my side, but this goes away. This could be due to my exercise to some
extent. I also feel sharp pains
different places in my legs from time to time, but this may be Lupron side
effects. Recently I was feeling a little
dizzy and had a slight headache. The
headache could possibly be the cancer in my cranium, but the pain seems to have
subsided. The dizziness is likely due to
the Lupron. I’d like to get more PET
scans, but I heard that the doctors are reluctant to do this because of that
glucose attraction mentioned above. Of
course the cost might be the real reason.
It may just be true that there isn’t much of a change, but I want
feedback to help me know if the diet, supplements, and exercise is helping stem
the disease. This lack of data is quite
frustrating!